Ethics in the everyday: exploring discursive care practices within households that include children with obesity

在我的博士项目中，我探索了房颤(AF)患者的药物服用，重点是被称为直接口服抗凝剂(DOAC)的血液稀释药(DOAC)和维生素K拮抗剂，如华法林。我回顾了有关人们如何服用DOAC的现有研究，发现三分之一的患者在80%以上的时间里没有足够的药物来遵循他们的处方，每四名患者中就有一名在一年内停止服用。我采访了17名患者，分析了他们描述疾病旅程的模式，他们使用的疾病隐喻的类型，以及他们谈论的主题。我从四个方面描述了患者经历的疾病之旅：“重大事件”、“漫长的道路”、“偶然发现”和“杂耍表演”。我接着展示了，人们对药物的决定来自于一系列演员、身体感觉、信息来源和物品随着时间的推移而产生的互动和谈判。最后，我演示了患者在谈论药物时如何开展工作并制定策略，以创造一个“好病人”的自我。这一努力反映了人们对风险、健康和不健康的身体、疾病的责任、值得护理和负责任地使用稀缺的医疗资源的道德信念和理解。这项为期一年的奖学金的目标是通过在同行评议期刊上发表文章、在会议上发表演讲和博客，与研究人员、临床医生、房颤患者和他们的护理人员交流这些发现。我还将创作一部针对临床医生和房颤患者以及他们的护理人员和家人的动画。我的叙事博士工作涉及到横切的主题，围绕健康实践和决策的制定，以及关于风险、责任和道德的信念是如何在心血管疾病中谈判的。有了这个坚实的基础，我将继续关注日常健康实践中的“道德”或“伦理”。我将扩展我的方法论专业知识，包括人种学，继续我对语言和隐喻的兴趣，并以语言人种学的方法将它们结合在一起。肥胖--一种复杂、耻辱和有争议的疾病--是一个丰富的案例，可以继续我的研究重点，在健康实践和决策的谈判上。我计划的研究将从诊所转向家庭，通过对东伦敦家庭的采访和观察，我计划的研究将有助于了解伦理和道德如何在儿童肥胖家庭的日常对话和日常生活中发挥作用。关注这些家庭集体中的社会实践和互动将阐明循环的道德信仰和社会结构是否、如何以及在多大程度上影响日常决策和行动。这将为人们提供机会，考虑其他可能不以体重为重点，而是以其他方式做好事和幸福的方式。我提出的两项奖学金建议将包括准备工作，如与来自伦敦东部的父母和孩子举办联合制作研讨会，以及技能培训。我还将进行元人种学，为该提案提供信息，并与来自当地社区的学者和从业人员建立网络。

In my doctoral project I explored medicine taking amongst patients with atrial fibrillation (AF), focusing on the blood-thinning medications known as direct oral anticoagulants (DOACs) and vitamin K antagonists such as warfarin. I reviewed the available research on how people take their DOACs and found that one third of patients do not possess enough medication to follow their prescription more than 80% of the time, and 1 in 4 patients discontinue within one year. I interviewed 17 patients and analysed patterns in how they described their illness journeys, the types of illness metaphors they used, and the themes that they talked about. I characterised the illness journeys that patients experienced in four ways: the 'big event', the 'long road', the 'chance find', and the 'juggling act'. I went on to show that the decisions people make about medicines emerge from the interaction and negotiation of a collection of actors, bodily sensations, sources of information and objects over time. Finally, I demonstrated how patients undertake work and strategies to create a 'good patient' self when talking about medicines. This effort reflects circulating moral beliefs and understandings about risk, healthy and unhealthy bodies, blame for illness, deservingness for care, and responsible use of scarce healthcare resources.The aims of this one year fellowship include communicating these findings with researchers, clinicians and patients with AF and their carers, through publication in peer reviewed journals, presentations at conferences, and a blog. I will also create an animation aimed at clinicians and patients with AF, and their carers and families.My narrative doctoral work attended to cross cutting themes around the enactment of health practices and decision making, and how beliefs about risk, responsibility and morality are negotiated in cardiovascular illness. With this strong foundation, I will continue my focus on the 'moral', or 'ethical' in everyday health practices. I will extend my methodological expertise to include ethnography, continue my interest in language and metaphor, and bring these together in a linguistic ethnographic approach.Obesity - a complex, stigmatising and contentious condition - is a rich case for continuing my research focus on the negotiation of health practices and decision making. Shifting from the clinic to the household, my planned study will contribute to understanding how ethics and morality play out in everyday conversations and routines in households with childhood obesity, through interviews and observations with families in East London.Focusing on social practices and interaction in these household collectives will illuminate whether, how, and to what extent circulating moral beliefs and social structures shape everyday decision making and actions. It will open up opportunity to consider alternative ways of 'doing' health and happiness that may not focus on weight, but on other ways of doing and being 'good'.My development of two fellowship proposals will include preparatory work such as holding co-production workshops with parents and children from East London, and skills training. I will also undertake a meta-ethnography to inform the proposal and build networks with academics and practitioners from local communities.